God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.

(2 Corinthians 1:3b-4, NLT)

Thursday, July 30, 2009

Thursday, July 30Faith continues to do really, really well! Sorry I've neglected to post any new pictures, I'm really too picky for my own good I think. Faith has two adorable teeth on the bottom, and an awesome smile that shows them, and I really want a picture of that smile to replace the yellow title picture at the top of the blog. BUT, my camera is too slow and she blinks in every single picture. So, I'm hoping to catch a good one soon on my parents' camera, and until then, everyone will just have to be patient! ;)She's had a pretty nasty cough and been really stuffy since right around the time we went to Boston, so we went in and saw our family doctor this week. She thinks it's probably something viral, and ordered an x-ray to check just in case. Hopefully we'll make it to get the x-ray tomorrow, although I'm sure it won't show anything.She's been doing great on feeds, she's almost exclusively on Neocate formula now as my milk supply is horribly low and she isn't very interested in breastfeeding anymore. She doesn't have much interest in anything to do with oral feeds, unfortunately. I had thought we dodged the oral aversion bullet, because she was so good at breastfeeding, but it seems she's just a little later than most kids with it. So, we'll be seeing an occupational therapist mid-August for a feeding evaluation, and hopefully they'll be able to give us some pointers to get her eating. Every time I try to give her solids, she gags until she throws up. Every time, that is, except the times I let her lick my ice cream cone. I don't do it much, because I'm pretty sure her docs wouldn't approve, but she eats ice cream like a pro, sticks her little tongue out and everything! No gagging, no throwing up. Dave's parents got a couple of good pictures the last time they were over for dinner, as soon as I get copies I'll post them. I think I need to get an ice cream maker and just make her some baby food ice cream.I should be hearing soon what her current goal for feeds is, the last time I heard it was 40 mL/hr. She's currently at 36 mL/hr, so we are REALLY close! I'm hoping to get a call about it tomorrow, otherwise I'll be calling to find out what I'm supposed to be working towards, since I am hopeful that I will get her there in the next week or so! I don't really know how it works, because we've never even been close to her goal before, but I'm hoping we'll be able to work something out to get her some free time off of the tube during the day.She has started really moving around, she's incredibly social, she's babbling more and more every day and now makes the "m" sound. She scoots all over the place (as far as her tubes allow) on her back, with some rolling thrown in for good measure, rolls from back to tummy and tummy to back. She sits up in a booster seat (but isn't very close to unassisted), even just a regular one and not the Bumbo-type one I had originally gotten her. I've started putting her in her seat at the table when we eat, but it doesn't seem to be making much difference... I really hope the OT will help with that. She'll be getting PT too, to help get her caught up and on-track with motor development, since she is definitely a couple of months behind in that department.I almost would prefer her to just be still for a little while longer though. More than once, in the mornings when she's still hooked up to her TPN/IV pole, I have left her in the living room for a minute while I go into the kitchen and come back to find her across the room, and her Broviac stretched much longer than I would ever have thought possible, or her feeding tube wrapped around her neck... I've started using her line cover now at night to keep her from touching her tubes, and I secure it to her IV pole and her pj's so that she can't get further than the length of the line cover. I need to make her some more line covers... I'm hoping after I hear about her current goal for feeds that I'll have a better idea of when we'll be done with TPN, but I am VERY optimistic that at our appointment in September she might be able to get her line out! At this rate, she just needs to be able to control her hydration once she's at full feeds, and then we won't be using her line at all... so hopefully we'll have at least a few weeks before the September appointment for a trial run before we make the move to take the line out. If things stay how they've been, she could very well get her line out without EVER having a line infection! (knock on wood!)We will be leaving soon for a very long drive to South Carolina, just me, the kids, and my dad, for Dave's graduation from basic training. We are all very excited to see Dave and get to spend a little time together before he ships to AIT!I will update more as soon as I'm able to, hopefully with news that Faith is at her goal for feeds!

Saturday, July 11, 2009

Saturday, July 11Faith started on formula tonight for her tube feeds. I'll be supplementing what breastmilk I'm still pumping with Neocate, at least until she's one and we can try transitioning her to regular milk. I hadn't expected at all that she'd be able to take regular milk that early on, but the nutritionist at our CAIR appointment in Boston this week said she thought we'd probably be able to try it. Noah couldn't drink regular milk until he was about 15 months old, it gave him really bad eczema on his legs, but maybe she'll be able to handle it easier. With Noah, he already had eczema when he was just nursing from the milk in my diet, and Faith hasn't had any issues like that, so my fingers are crossed!Speaking of Noah, I'm really not sure how much he comprehends about Faith's stuff, but I think it's really interesting. He knows she has tubes, and will actually tell me when we're in the car if Faith is playing with her "tubey". He also noticed that Faith didn't have a belly button- he'd list everyone in the family, saying they each had a belly button, and then he said "Faith doesn't have a belly button, Faith has an owie." And a pretty funny assumption of his that I just found out tonight- we were on the tollway driving past the airport, and saw a plane taking off. Just for fun and to make conversation, I asked him where he thought the plane was going. His answer- "To the doctor." Because he knows Faith rides on the airplane to go to the doctor. And we saw more planes take off after that one, and sure enough, every single one was going to the doctor. I know Faith won't remember any of this, but I do wonder how much, if any of it, Noah is going to remember...

Friday, July 10, 2009

Friday, July 10Faith and I are home after a long and bumpy flight. She's still a little rockstar after her surgery yesterday, just like nothing ever happened, and she made many friends with her flirty eyes and smiles on the flight home.I just had to post some of her lab results, because they are so awesome I can't believe it! Her liver enzymes are great- AST 32, ALT 20, and her bili levels are amazing too- total bili 0.3, direct bili 0.1!! To put it in perspective, when we got to Boston less than four months ago, her AST was 436, ALT was 318, total bili was 9.9, and direct was 6.7... !!!!I honestly can't believe how much better she is, it doesn't seem like it was just 3 1/2 months ago that I took little orange Faith on our first flight to Boston... How anyone could deny Omegaven's effectiveness is COMPLETELY beyond my understanding. I'm excited to take these lab results to share with Dr. Soden when we follow up with him in August... it will be our last appointment with him, because we will probably be done with Boston soon and will need a doctor here who I trust to make decisions, and I will never trust him... but it will be worth it to see him one last time, to show him just how wrong he was!

Thursday, July 9, 2009

Thursday, July 9Faith had surgery this morning to fix her scar where the Denver surgeons went into the same one three times. Dr. Puder did it, and it ended up being a little more involved than he anticipated, so he was concerned that she might need to stay in the hospital overnight to help control her pain. Fortunately, as soon as she really woke up from the anesthetic, she gave the nurse a big smile and showed us she was going to be just fine. We got out of the post-op area around 12:15 or so and headed over for our CAIR appointment, and by the time the docs came in, she was squirming and rolling all over the place, lifting her legs up to her stomach, and acting like nothing had happened at all! She had a little while earlier when she needed some Tylenol and wasn't too happy, but even then, it wasn't bad at all, and she has been her usual smiley self.The best news of all- she's over 60% enteral feeds now, and growing well, so we are going to be dropping from 6 nights a week of TPN to FOUR!! So instead of just hooking her up to replacement fluids on Thursday night, now she'll just get fluids Thursday, Saturday, and either Monday or Tuesday. Everyone was SO impressed with how great she looks and how big she's getting. They're still waiting to hear from the manufacturer about Cisapride, and the best estimate is that it will be 3 weeks or so until they do, so hopefully by then we'll know for sure if she needs it. Because she has done well with the more aggressive increasing schedule for feeds, I'm going to keep that up for as long as she tolerates it. I'm planning to go up by at least 2 mL/week, if not 3, depending how well she does.The only bad/disappointing news is that we are going to be introducing formula now. I am out of frozen breastmilk at this point, and not getting enough when I pump to keep up with her bag. I am hoping to keep her still on as much breastmilk as I possibly can, but when I don't have anything to fill her bag up, she'll be getting Neocate. They are optimistic that she might actually be able to transition to regular milk when she's a year old with very little issue, too, which was a surprise to me.Our dinner tonight didn't work out as planned, unfortunately Ellie wasn't feeling well and had to head in to the hospital to get checked out, and the other family that was originally planning on coming got some bad news today I guess. I also ran into Blaise and her parents in the hospital lobby, but they weren't able to join us either, so it was just Faith and I and Sam and his family. It was still great to visit with them though and I really enjoyed meeting them and having a good chance to chat after having talked to them online for quite awhile.Well, Faith and I have a pretty early flight tomorrow and have to go to the hospital first so Dr. Puder can change the dressing on her incision... it was brought to my attention today that I need to update the picture on the page title, which I had noticed awhile back but didn't get a chance to do. I will get rid of that old yellow picture and replace it with our nice pink girl as soon as I can though! It amazes me now looking back at old pictures how bad she really looked, and then to think that I thought she looked really GOOD then... Now that she really truly does look good, no one even can tell she's not just a normal, healthy baby! We've come a LONG way in not a very long time....

Wednesday, July 8, 2009

Wednesday, July 8Wow, it's been a long time since I've posted an update! Don't worry though, no news is good news! Faith is doing great. We are in Boston until Friday morning for her first follow-up appointment since going home. She is having surgery in the morning to fix her scar (and give her a belly button), it's minor enough that she can have the surgery in the morning and her clinic appointment at 1:00.Then tomorrow night should be fun, it will be almost like an unofficial Omegaven reunion because a bunch of families are planning on getting together. It's so nice to get together with other people who've been through similar stuff.I haven't updated because not much has happened. In the past month and a half, we've been to Children's in Denver 4 or 5 times for various appointments and the NICU reunion. We've been to our family doc once for Faith and once for me, for a check-up for Faith and to order about 10 different blood tests for me to figure out what's going on and hopefully come up with some kind of definitive diagnosis that can lead to treatment.Faith rolled over for the first time on June 5, from her stomach to her back. She hasn't really done it again since, although I know she can... she doesn't like being on her stomach so I don't think she has much desire to roll over! She also got her second tooth, so now she has two cute little teeth on the bottom. She continues to grow like a weed and charm the socks off of everyone who meets her.Faith got up to 27 mL/hr on feeds a couple of weeks ago, then backed down to 24 mL/hr because she was having diarrhea. The hope is that we'll get her on the Cisapride soon and be able to push feeds a little more aggressively to get off the TPN, but the concern with excessive pooping associated with higher fees is that she's not really absorbing the higher volumes, so even if she takes more in, she won't grow because she won't be getting what she needs from it.Then last week, I found out she was being overdosed on her Ursodiol! Apparently there was some kind of mistake when the prescription was transferred from the pharmacy in Boston... her real dosage is supposed to be 30 mg/mL, and the dosage the pharmacy at home made her was 300 mg/mL!! Luckily it's a medication that doesn't have any serious side effects in high doses. The only negative side effect is... you guessed it, diarrhea!!So, in the last week we have made it from 24 mL/hr back up to 27 mL/hr, with high hopes of continuing to increase feeds faster than we have in the past. (We've always only gone up by about 1 mL/week, but since she's tolerated going up by 3 in the last week I think I will try to go up by at least 2-3/week from now on.)I am hoping to find out more about where we stand with Cisapride tomorrow at clinic, although I'm sort of hopeful that maybe she won't need it after all...There has been talk between me and some of the other Omegaven families about trying to start a charity to help families whose insurance won't pay for them to go to Boston. Once they are here, the Omegaven is covered by a grant, and housing is available for free, it's just travel and the hospital bill that keep people from coming, and that really sucks. If anyone who reads this wants to help get a charity established or raise funds, let me know!I'll try to be more regular in posting updates, although really nothing exciting has happened, so I don't have much to post about! That is a change I am perfectly happy with, though, and something I hope doesn't change anytime soon.

Total site visits:

Welcome to Faith's Place!

This is Faith's Place. Faith is a gorgeous little girl who had a long recovery from being born with a serious birth defect called gastroschisis (she had a hole in her abdominal wall and her intestines were on the outside at birth). Her intestines suffered some damage, most likely from being exposed to the amniotic fluid before she was born, and didn't work like they should; she was diagnosed with functional short bowel syndrome at about 4 months old.

Faith was born November 13, 2008, and spent her first 127 days in the NICU at Denver Children's Hospital. Because her intestines were not functioning, she was not able to receive nutrition in the normal way through her stomach and intestines, so she was on IV nutrition (TPN and Intralipids) during this time.

As a result of being on TPN for such a long time, she suffered liver damage to the extent that her doctors in Denver believed she should be evaluated and listed for a small bowel transplant. However, with a survival rate of only 50% at 5 years post-transplant, we weren't ready to take that step. Instead, we did considerable research on our own, and found out about an experimental treatment for babies with TPN-associated liver disease (TPNALD) called Omegaven, which was run by Children's Hospital Boston.

On March 24, 2009, Faith was admitted to Children's Hospital Boston, and became Omegaven baby #115. After only 30 days on Omegaven, Faith's direct bilirubin level (an indicator of liver health) had already dropped from 6.7 to 2.0, including an expected spike to 8.0 about 2 weeks after starting Omegaven treatment. Less than 6 months after starting Omegaven, she was fed 100% through her stomach (enterally), getting large amounts periodically during the day (bolus) and continuous feeds over night, and her liver function test results were *perfect*.

Her central line (a permanent IV line in her leg through which she received her TPN) was removed on September 16, 2009, after almost exactly 10 months to the day of having a central line, without ever having a line infection!

She learned to eat and drink by mouth, and by 18 months old, she was 100% orally fed! Her g-tube was removed in December of 2010, making her officially tube-free for the first time in her life. She is now enjoying life as a "normal" preschooler, with very little medical follow-up, and other than her scars, no outward signs of any of her journey to this point.

If you are new to Faith's blog, click on "2008" in the archive list, scroll to the bottom of the page, and work your way up to read her story from the beginning!

Search Faith's Place

Statistics to consider...

-The survival rate of children with direct bilirubin levels greater than 3.0 for 3+ months is only 22%. (Faith's direct bilirubin levels were greater than 3.0 for about 4 months.)-The survival rate of children on TPN for longer than 1 year is only 10%.-The survival rate of children who receive a small bowel transplant at 5 years post-transplant is only 50%.-The survival rate of children, with a history of TPN-associated liver disease and direct bilirubin levels of at least 2.0, on TPN, with Omegaven replacing Intralipids, is 98%!!!!!!

Education is the key to saving the lives of children with TPN-associated liver disease. The sooner these children receive Omegaven, the better their chances are of a "full" recovery (any damage that is done stays done, Omegaven does not reverse scarring in the liver).Healthcare professionals who know about Omegaven and neglect to tell their patients it is an option, in my opinion, are failing to uphold their responsibility to do whatever it takes for their patients' health and well-being.If your child is suffering from TPN-associated liver disease and you have found out about Omegaven and its benefits on your own, and your doctors are giving you the run-around when you bring it up to them, it's time to change doctors!! (believe me, I've been there) Omegaven WORKS, as long as it is not started too late!